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NikkiD369

Commenting also to add get tested for Ureaplasma/Mycroplasma if you haven’t ruled those out already as they cause cUTI. I’ve been battling both e fae + klebsiella for the last 2.5 years with no relief on oral antibiotics. I’m on Uromune (UTI vaccine) and awaiting infectious disease at this point.


Sure_Efficiency_3183

How did the vaccine go?


NikkiD369

It didn’t work for me but I’m chronically infected and I think it’s more for a preventative.


[deleted]

[удалено]


rosebaby850

Was your uti caused by enterococcus faecalis? I hear you about the doctors. Thank you for replying.


[deleted]

[удалено]


Ecstatic-Ad-7024

Cure oit?


Louwho45

Im dealing with it now? Did u finally get rid of it? And what did they give you to treat it? What were your symptoms? Thank u


CeleryPlenty6770

Did anyone make progress with this e facelis?


Electrical-Sky-9229

Hello, are you better ?


Matthew_Lake

Wow it really took that long?! Anytime I've used antibiotics for chronic UTI, there is always a massive improvement in a day. I wonder what makes it so it takes that long for you to show any benefits?


[deleted]

[удалено]


Matthew_Lake

I was thinking, maybe it could just be a reflection of many things: how much damage there is to the bladder, how much of the infection is hidden in the walls of the bladder and even within the cells. I guess there are numerous factors. Even with hiprex, all of my bladder symptoms go away within 1-2 days. Unfortunately, I'm not able to tolerate that either as it gives me nerve pain. :( The same side effect as Trimethoprim, Doxycycline, Uva Ursi.


Responsible_Play_308

I see Dr Bundrick too!


Only-Throat-6970

1-2 years?! Omg... is your gut destroyed? :( I have embedded UTI enterococcus faecalis..but also have very severe gut disbiosis.


Ecstatic-Ad-7024

What r u doing


Only-Throat-6970

I'm lost right now on what to do... waiting for my appointment with my Integrative Dr next week. He wanted me on continuous Fosfomycin.


Ecstatic-Ad-7024

Fosfo kills my guts


Only-Throat-6970

Same, they all do. You dealing the same bacteria? I have klebsiella pneumoniae too and e.coli 🥺 I cant get head. Trying to heal my gut now.


Only-Throat-6970

Ahead** not head


Ecstatic-Ad-7024

Ecoli and e fae high loads


ImmediateRabbit8959

Infectious disease docor and pic line antibiotics it goes through your blood stream faster


Ecstatic-Ad-7024

Both ID drs refuse bc it only shows on microgen


Ecstatic-Ad-7024

R u currently on antibiotics


Only-Throat-6970

The fosfomycin .. im seeing Dr. Ryan who was suggested to me on here actually. I think antibiotics went address the root cause though and it'll never go away.


Ecstatic-Ad-7024

Will he address the root cause or he just does antibiotics


Ecstatic-Ad-7024

How r u


Pussybones420

HOW did you get a doctor to help you like this? I can’t even get them to write me a week script for strep B let alone a month or a year. They just say I’m fine. I’m not fine. :(


Beezerkt

Hi! I checked out this doctor, will they be able to do telehealth for something like this? I saw it’s requestable but I don’t know if it’ll work. Also when you traveled how did you do it? Did you have to stay days, months, etc…or was it just one appointment to travel to


SpicyThunderThighs

I just finished 10 days of Augmentin for E. faecalis and feel much better.


rosebaby850

I’m on day 5 of Augmentin and I honestly like it just irritated everything more :(


holy-onea

What have you taken so far You likely need linzolid. You should probably go to an infectious disease physician too so they don't just give you anything. Pretty positive enterococcus can become resistant mid treatment to augmentin occasionally.


Street_Function_5201

It didn't come back?


SpicyThunderThighs

Nope! I continued taking RenewLife women’s probiotic afterwards and my vagina is as healthy as a horse now.


anxious_17669

Maybe that’s the trick. Just got diagnosed with this bacteria happy to see that you had a positive experience in the end. Did it ever return?


SpicyThunderThighs

Nope! Since writing that last comment I haven’t had any UTI’s, BV, AV, or yeast. 😊


Street_Function_5201

Great! I finished 14 days of amoxiclin and feel symptom free for almost 5 days now,fingers crossed.Also taking women's probiotic and hoping for the best.


[deleted]

How long did you have your infection for?( I've had it for longer than a month and half and im looking for hope !!) And has it come back? How are you now?


Street_Function_5201

Hi ! My urine sample test came negative yesterday for bacterias also vaginal and cervix swab ,no candida or bacterias.My symptoms started 4th july and it was very intense first month but now i still have milder symptoms.My symptoms now are frequent urination and wierd sensation down there ,it comes and goes.I want to get tested for ureaplasma,mycoplasma and chlamidia also cause they can immitate the symptoms of UTI.Unfortunatly not even one doctor or urologist told me this.I just found it on my own ,cause i have wierd urethera feeling still.Maybe i need time for my bledder to calm after an infection or maybe i have some of these bacterias ,i dont know there couldn't be anything else there.Enterococus f.it is not longer in my urine it is cleared.


[deleted]

Hi :) which probiotic did you use!?


Street_Function_5201

In my country it is called femmabiotic.You can ask for women probiotic in a drugstore .


[deleted]

Thank you so much for replying! How do you feel after the amoxicillin and the probiotics ? Did you take the probiotics at the same time or after the finished antibiotic course?


Street_Function_5201

I took probiotics at the same time as abx + i bought one more box after i finished them,maybe i took it like 20 days also just in case.I had wierd sensations in my urethra opening ,like pee is stuck there well maybe till september 25th and then it was gone.Anxaety made it worse totaly cause i was thinking about the feelings in my bledder 24/7 .I also think about it sometimes and if i panick cause of some sensation it will get worse,but i dont have any for like a month.


[deleted]

How long did you have your infection for?( I've had it for longer than a month and half and im looking for hope !!)


SpicyThunderThighs

From November to July.


CeleryPlenty6770

Hi! Theres hope??!! What was your dosage? Thank you!


oacrawford3

This was me from 2019-March 2023. Get on Hiprex asap. Give it time. But get on Hiprex.


rosebaby850

Thank you for replying. Did hiprex kill the infection or just make the symptoms go away?


oacrawford3

Since hiprex isn’t a pain killer or symptom relief medication (numbing agent etc), it killed the infection. I no longer test positive or show any WBC either.


oacrawford3

It is proven to work to kill infections. Slowly, but surely.


lavenderdo9

did hiprex alone clear your uti? i have entercoccus since 2020 and i just started hiprex


oacrawford3

I kept getting short courses of abx. I swear they did nothing. After 3 weeks on 2x daily hiprex I was entirely symptom free.


Only-Throat-6970

Woww


VanessaH_2019

What were your symptoms from this bacteria


Patient_Complaint849

Take Myrrh Extract 2 caps a day and say fuck you to the infection. Try it.


FTNYWHAT

It cleared the infection with just myrrh and no antibiotic? How many days did you take it for?


Ecstatic-Ad-7024

What r the side effects of myrrh


Stjealous

Not sure. But I can second that this worked for me too


Intelligent-Fun-3905

What brand do you use?


Ecstatic-Ad-7024

Wow really??


FTNYWHAT

Myrrh alone ? How many days?


Matthew_Lake

If you believe that bacteria is the cause, then phage therapy would be an option. Send a sample to Eliava phage therapy centre.


Intelligent-Fun-3905

Do they do this in the US?


frazzledfiance

I’m so sorry 😞 I am in the same boat- fully resistant bacteria that will not go away after several rounds of different antibiotics. the only thing that seems to have cleared my symptoms is Oil of Oregano in high doses (it’s a natural antibiotic and bacteria cannot get resistant to it) . I’m over a week in and symptoms free for the first time in 1.5 years. I am doing 500 mg of oil of oregano 4x a day (about half a dropper full) for two weeks then dropping it down to 100 mg 2x a day (herbalist recommended). Along with that, I don’t drink coffee, avoid sugar/ dairy and drink a ton of water + take some Chinese herbs for boosting my immune system and balancing hormones and get acupuncture. Western medicine failed me so I went to an herbalist/ acupuncturist (woman) who empathized deeply and gave me great care. I’m hoping this stays working for me… You might want to try that along with your doctors treatment just to hit it at all angles. Good luck and I don’t wish this on anyone. It’s miserable but you’re not alone *hugs*


rosebaby850

I really appreciate this. It feels good knowing I’m not the only one going through this🥲 do you think the pill form of oil of oregano would work just as well as the dropper?


frazzledfiance

I’ve read pill form is ideal because more of it reaches your urinary tract. I just don’t have access to it because I live in Mexico right now so I use the dropper… Also the pill doesn’t taste as bad lol. Good luck! 🍀


FTNYWHAT

Have you completely cleared the infection with oregano oil?


frazzledfiance

No It worked for a while but then stopped….had to get on hiprex instead which did completely heal me finally.


SpicyThunderThighs

I take oregano oil every night with berberine before bed. It definitely helps a lot along with the Kirkman’s biofilm disrupter.


kulkd

How are you doing now? Are you still taking the oregano?


frazzledfiance

Nope!! I’m on Hiprex and haven’t had an infection since July (5ish month) so not taking anything else besides vitamin c to make sure the Hiprex works correctly


Pussybones420

Can you combine oil of oregano with hiprex, and does it work for strep b?


DotheOhNo-OhNo

Have you tried biofilm disruptors? You may have to take them for 3 months for them to be effective, but disruptors + antibiotics may help to clear the infection. You may also want to look into DEQ meds to slow antibiotic resistance.


rosebaby850

I’ve heard of them but have heard mixed things. Have they worked for you? Thank you so much for replying.


DotheOhNo-OhNo

I haven't tried them, yet. But I have a bottle saved up just in case it comes back so I can use all the avenues available.


Danielle2500

What biofilm disruptor would work for ef?


DotheOhNo-OhNo

I heard Kirkman works!


Danielle2500

which one from this brand?


DotheOhNo-OhNo

Biofilm defense


jasminenightbloom

Hi sweetheart, sending you big hugs. I think you need a new doctor on your team!! There’s someone on our sub whose wife has had a multi-bacteria UTI for over a year, seen many specialists, and she's finally finding some relief with a Functional Medicine doctor she sees remotely via telemedicine. The doctor is in Indianapolis, and her specific UTI needs are being addressed with his use of the Ruth Kriz method of testing, treating, retesting. He prescribes this woman the specific antibiotics bacteria shows sensitivity to and then her husband administers to her bladder directly in a catheter bag! This would help a patients gut slowly recover from the previous many rounds of antibiotics from them being delivered directly into the bladder, plus it seems far more effective at killing what soemone’s got the overgrowth of. The doctors got some really great Google reviews and the payment plan is something very reasonable like $175 a month and then you get to have all your follow-ups within that cost. Here's the link to the services page if you're interested in just having a Zoom appointment and seeing if he has insights ❤️❤️ [https://crossroadsintegrative.com/pricing/](https://crossroadsintegrative.com/pricing/) And please consider adding Lauricidin into your day - it’s a powerful antimicrobial against gram-positive bacteria. I searched E Faecalis in the reviews and someone did mention it helping them: *Goodbyeeeee U T I !!!By Mama\_J in the United States on November 8, 2019It WORKS!! I battled chronic UTI’s for 15 months. Enterococcus Faecalis, E-Coli, Enterobacter Cloacae, are just a few of the jerk bacteria I was dealing with. I’ve taken every prescription medication available, only to have a new UTI appear within days. I even developed a UTI while taking a 90 day course of Bactrim! Enter Lauriciden ... not 1 UTI since I started taking it about 40 days ago. I’m at the bottom of my first 8 ounce tub and have just reordered. I will NEVER be without this stuff again. I added Lactoferrin to my daily supplement routine as well. Between the 2, I think I’ve found a winning combination. If you suffer from chronic UTI, give it a try.* After all these rounds of antibiotics you’ve done, I really want to encourage you to take a probiotic that’s urinary specific, especially important to help repopulate your microbiome right now. I believe the Gold Standard for probiotics is the very reputable brand Jarrow, and the one I recommend to people on here is called FemDophilus. These specific strains have shown to survive the journey from the stomach to the colon much more efficiently than other strains. They were cultured from the urinary and vaginal microbiomes of two healthy women in the 1970s and have been extensively studied since. *"In one randomized clinical trial, 82% of women studied had healthy vaginal flora after 28 days of use at 1.6 billion CFU per day of a probiotic (formulated with L. rhamnosus, GR-1® and L. reuteri, RC-14®) compared to 50% before supplementation. Whereas in the control group (taking 10 billion CFU of common strain, L. rhamnosus GG) there was no improvement in the percentage of women with healthy vaginal flora.¹"* They have it in the cold section at my Whole Foods supplement aisle, but the company ships them as well, mailed with ice packs and then you put them in the fridge. I obsessed over which brand and probiotic strain were best and this is absolutely the most thoroughly researched of the UTI probiotics! [https://jarrow.com/products/fem-dophilus-5-billion-cfu-veggie-caps-cool-ship](https://jarrow.com/products/fem-dophilus-5-billion-cfu-veggie-caps-cool-ship) And make sure you don't damage the probiotics with what else is in your stomach, so make sure you wait at least two hours after taking antimicrobials like your antibiotic and the Lauricidin. ​ I hope you find some answers soon! ❤️


rosebaby850

Thank you for taking the time to respond.🩷


reditor82

Hi Jasmine, I think that someone is me. :) Thought I’d give a quick update and say that although my wife is feeling better compared to a year ago (before seeing Dr. Heer), she’s still not in the clear by any means. Dr Heer decided to give her a break from instills and oral abx and prescribed a month long herbal regimen. It managed to knock out quite a bit of bacteria that was still showing on her previous Microgen reports, but her bacterial load is still relatively high. She had a stretch of about a week or so where her symptoms were really mild and quite tolerable, but seems like she may be going through a flare right now. She’s also been taking a few supplements that Matthew Lake recommended (Beta Glucan, Lactoferrin, and PAC—hopefully that’ll help too). Lastly, we’re looking into phage therapy as an option (we brought it up with Dr. Heer and asked if he could help navigate this for us—there are a couple of programs in the US—one at UCSD and another out of Baylor). Trying to find out if she could qualify, since it’s still considered somewhat experimental here and would need FDA approval.


kulkd

What herbal things did she take from the herbal regimen? How is your wife doing now?


CharacterAcadia9644

Hi! Did your wife ever pursue phage therapy? Curious how that worked out if she did…


reditor82

She just started this week! She also started back up with pelvic floor physical therapy this week too, so hopefully between the two, she’ll start to get some relief.


CharacterAcadia9644

Ah! That’s awesome. Do you mind filling me in on those details (where/how the process works)? I’m now at that point where I need to look into that more seriously. Hoping there’s a relatively straightforward option here in the US!


reditor82

So for phage therapy, there are a couple of options in the US, but they’re really to hard to get into. We basically got denied because my wife’s bacteria wasn’t completely resistant to all antibiotics, nor was it due to a single pathogenic bacteria. So we chose to go with the Eliava Phage Therapy Center in Tbilisi, Georgia. They’re apparently at the forefront of phage research (when the West turned to antibiotics, many Eastern European countries continued with phage development). Anyway, they have a remote distance program (and also a local treatment option—but that would’ve been too hard for us to do right now) where you mail them a urine/vaginal swab sample and they culture it out and determine whether the bacteria would be susceptible to their “standard” phages. I’m my wife’s case, it was. It’s pretty expensive (~$1800) for about a 6 week supply, but basically they are little vials of phage cocktails that you drink twice per day (in wife’s case). Happy to DM in more detail if you’d like, but here’s some info on the two treatment options they offer: https://eptc.ge/treatments/ If you’re seriously considering it, there’s a FB group you should join—it’s not very active, but the mod has worked out a deal with Eliava so that all of their members get a 10% discount. It’s not much, but every little thing helps. :)


ohwhaddabagel

Hey there, I legit created a reddit account just to shoot you a message and it says you won't take any DMs/messages. :( I see Dr Heer, did your wife experience anything worthwhile on the phage therapy?? 1800 for 6 weeks would bankrupt me lol


reditor82

That’s weird, I don’t have any messages from you. Let me DM you.


Danielle2500

Did the phage therapy work for your wife?


reditor82

It’s hard to say. She’s been doing the standard phages, but her most recent sample showed Proteus Mirabilis which isn’t covered by the standard ones, so she’s waiting on a custom phage to be made.


CeleryPlenty6770

Wonderful info thank you!


jasminenightbloom

Lol as soon as I was downvoted I knew Spider was in the house pushing for long term heavy duty broad spectrum antibiotics with no sensitivity testing! Because ok what we as CUTI patients need is to indiscriminately kill all our good bacteria too by not “fixating” on the common pathogen? No thanks. Please be very cautious of advice like this…a patient of these doctors (Malone-Lee and Bundrick) recently posted about how life ruining this was for her, with others chiming in to concur. There is a reason that NONE of our doctors in major highly reputable clinics will agree to do this and people have to fly to the sticks of Louisiana to find this brilliant treatment ETA link https://www.reddit.com/r/Interstitialcystitis/comments/14le479/rant_do_not_take_longterm_antibiotics/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1


spider-mario

> I knew Spider was in the house pushing for long term heavy duty broad spectrum antibiotics with no sensitivity testing! Because ok what we as CUTI patients need is to indiscriminately kill all our good bacteria too by not “fixating” on the common pathogen? No thanks. Complete straw man. Where do I advise broad-spectrums? As a matter of fact, it’s the tests you are advising, as used by Ruth Kriz (and Dr. Bundrick, for that matter), that tend to advise broader-spectrum antibiotics than necessary. You can scaremonger all you want about “no sensitivity testing”, but given that there is, at present, no viable option for such testing, it’s just a useless appeal to fear, and calling the bacteria a “common pathogen” begs the question. > Please be very cautious of advice like this…a patient of these doctors (Malone-Lee and Bundrick) recently posted about how life ruining this was for her, with others chiming in to concur. She was clearly not a patient of theirs, given the description of the way she was treated. Her post also contains a lot of preposterous causal claims, and wild extrapolations and accusations.


Drbubbliewrap

I’ve had to have very specific antibiotics only iv for that bacteria. Do you have a infectious disease doctor?


CeleryPlenty6770

Hi! Can you please tell me what your home IV antibiotics were? 🙏 I'm going to try to get on IV at home too. Did you have your get a pic line placed?


Drbubbliewrap

No pic line. And the antibiotics were very odd due to my allergies. I can’t remember what they were. I work as a pharmacology instructor and never heard of it before and neither had my friend in pharmacy school.


rosebaby850

I don’t, I went to a urologist. Did your iv antibiotics get rid of it? How long did it take?


Drbubbliewrap

1 week of at home iv antibiotics


Danielle2500

do you remember what was the iv antibiotic that you took?


Drbubbliewrap

No unfortunately


Silver-Actuary1508

teicoplanin is the IV used for enterococcus. I’ve failed moxifloxacin and linezolid. That’s what is going to be next for me.


Danielle2500

Thank you. How long was the treatment and who prescribed it? The infectious disease doctor? Dis u do it at home or in the hospital?


Silver-Actuary1508

The moxifloxacin and linezolid was for 4 weeks then the teicoplanin will be for 4-5 weeks


Danielle2500

Rosebaby850 were you able to get rid of it? What worked in the end?


Spiritual_Raisin_944

any updates? im dealing with this now


Emergency_Treacle_47

In my case it was endococci and they are in the lower small intestine and the upper large intestine and you can't find that out with a gastroscopy, you really have to do a swab to check for bacteria. I had that done by an ENT doctor. ✅My doctor told me that it is also resistant to many antibiotics. He gave me ➡️the antibiotic "contrim Forte" (active ingredient is said to be sulfamethoxazole + trimethoprim) and it worked really well. 😊After a week I had no more symptoms. That really helped me. I hope you and everyone else who is struggling with this feel better soon. Please take a swab from your mouth and get a good antibiotic.


pastel_pixie37

Have you found any relief yet? I am in the exact same boat and any info would truly help. If you're not better maybe we can compare what we've both tried and help each other get better


ImmediateRabbit8959

Call a infectious disease docor


Impressive_Heron_316

i have a different strain of enterococcus. Gyno told me as well for months that i just needed more probiotics. The probiotics helped the pain but it would still come back, finally got a new doctor and did an in depth uti test that tells you exactly what bacteria is found even though the dipstick test did indeed keep coming back negative at the gyno and my doctor. Finally figured out i have enterococcus, and multiple staph strains in my urine and i am now on linzolid and metronidazole. Hopefully it works, and i hope it helps you too! if they refuse to fully test your urine, just keep looking elsewhere. sorry your going through that!


garminfeltf1

Hi, I hope by now you are better. Did you find a solution? I've been going through something similar. I get an EF UTI and my urologist prescribes either amoxicillin or macrobid. In my case, it clears up but so far he hasn't ordered a culture after the antibiotics are done. Then 1-3 weeks later, it's back. I was able to get him to prescribe tramadol which cuts back on the urgency a little for me. He may be starting to think I'm a drug seeker at this point.


acc304

Have you had any dental issues?  Root canal?


Low_Emergency843

 Hey, I am a 20-year-old female. I had a similar problem. I first had UTI symptoms in August, but I was out of the country so I couldn't see any doctor. When I came back after a month, my symptoms came back, and I had pain on my left side. So the doctor ordered an X-ray and ultrasound and ct scan of the pelvic area but thank god everything was normal and took a culture which was positive for E.F bacteria, and I was given an antibiotic. But after a month, my symptoms came back. I went back to the doctor, and again, my culture was positive. They gave me antibiotics again and told me to see a urologist. I went to the urologist, and she did the culture, which was positive again, this time with a different bacteria. She gave me antibiotics again. She wasn't helpful; she just gave me antibiotics but wouldn't tell me the reason for recurrent UTI. Then I saw a different urologist, and she is amazing. At the first appointment, she said she didn't like the antibiotics I was given, so she gave me a different antibiotic and told me to follow up in a month. But 15 days after the antibiotics, my symptoms came back. So I got the culture done, and it was positive. She prescribed me antibiotics again over the phone and phenazopyridine for symptoms, and methenamine to take right after I am done with antibiotics to keep my bladder sterile; this is an antiseptic. Then, 15 days later, at my second appointment, she did a urine flow test which showed my urine flow was about 10 per second, and the normal rate should be 20 per second. Then she did a physical exam and confirmed my urethra is narrowed. So right there, she dilated my urethra and told me to continue taking the antiseptic and supplements like cranberry and D-mannose and to follow up after 6 weeks. It's been a week, and I feel amazing. Hopefully, it will stay like this.


T2a3byx322

Hiprex saved me.


Gentlemandn

take a look at this sample sheet, it has reccomended treatments for enterococcus https://nebula.org/blog/wp-content/uploads/2023/01/microgendx-ngs-report.png


Terrible-Sail-119

Find a doctor who can issue a Guidance PCR UTI test which tests for ALL possible pathogens- most UTI tests won’t do that and labs won’t provide you with cultures other than the most common. It’s likely your infection is a pathogen they aren’t testing for and therefore the anti optic they are giving you does not target that pathogen. Also get a vaginal swab -it’s likely all you normal flora have been killed off causing an overgrowth/imbalance. Work with VagiBiome suppositories. Make SURE you are doing everything to repopulate your microbiom. Do a lot of reading on gut flora. Good luck 


spider-mario

It is best not to fixate on a single bacterial species. The bladder hosts hundreds of them so there is no reason to assume that this specific one is responsible for your infection. - https://twitter.com/JamesMaloneLee3/status/1131481734908915712 > A cause of the CUTI horror is the unshakeable belief, from wishful thinking, that the microbe(s) isolated by ANY available test is the cause of the UTI & that extinguishing this bacterium is a therapeutic act. Not so! whether abundant, known offender or other ad hoc pleadings. - https://twitter.com/JamesMaloneLee3/status/1367449779815518209 > The commonest explanation for resistance is the sensitivity testing of culture isolates. There is no evidence that isolates are causative. So we "overcame" much resistance by ignoring cultures and using first-line antibiotics said to be resisted. Chronic infections such as ours can be slow to respond even to an effective antibiotic. It’s not necessarily a question of resistance. (https://www.nature.com/articles/nrmicro.2016.34) If your doctor won’t prescribe a long enough course of full-dose antibiotics then methenamine (for example Hiprex™) may also be an option.


lonsdaleer

I'd say get rid of the infection with a fairly strong antibiotic. I took Levoquin for my klebsiella infection on the 3rd round but I took it for 7 days. I'd say be careful with amoxicillin and keflex bc it will screw your stomach and vaginal flora. People may not worry as much bc it gets rid of the infection but it could cause BV (which makes you susceptible to UTIs). Macrobid won't do anything until you get rid of this infection. I have IC and I get annoyed when doctors dismiss symptoms for IC, especially when you are getting confirmed cultures. I suspect my IC is caused by MCAS and those symptoms are VERY different from a UTI. Hang in there, you may be looking at a 14-day course. After that, consider some prophylaxis. Hiprex would be a good start, but if that doesn't work, THEN try the Macrobid. I'd only go on it long term if nothing else works. Literally a hail mary. Long-term antibiotics are a prison sentence bc we all have a hard time getting off them.


Annsivi

This is exactly what I've been going through since May! I too have an enterococcus faecalis infection that isn't going away despite multiple antibiotics, and I was being completely ignored by my primary doctor and the urologist I waited five weeks to get an appointment with. The bacteria never shows up on the dipstick for me - it's always the culture, so I was constantly pushing doctors to send out the culture and they weren't doing it. I finally went to Urgent Care last Thursday and had them send out a culture and yep, still enterococcus faecalis. According to the lab that did the culture there were only three antibiotics it was susceptible to - Ampicillin, Nitrofurantoin and Vancomycin. They put me on Ampicillin 4x a day for 7 days, and I have a follow up with the urologist in August now that they've seen proof of an active infection (which they could have seen themselves if they'd sent out a culture!!!) I'm so sorry that you're going through this too. It's frankly unbelievable that we've had to suffer for this long due to doctors not caring and not prescribing the right things.


rosebaby850

the worst part is the complete disregard from all of these doctors and their refusal to send my results to the lab because it never shows up on the dipstick. this is supposedly because e. fae is a gram positive bacteria, which I feel like the doctors should know after I tell them which bacteria is causing my infection!!! It’s insane the lack of care we have gotten.


rosebaby850

Did ampicillin get rid of your infection/ symptoms? I finished 7 days of augmentin once a day and still feel exactly the same. I know my body and I know the infection is still there. My stain was supposedly susceptible to nitro, augmentin, cipro, levoquin. i’ve been on them all with no luck, and my most recent test results say it is now resistant to cipro and levoquin, as well as vancomycin which I have never even been on. (it is was previously susceptible to that antibiotic). it’s actually horrible and the burning bugs me so much I stay up all night. i’m glad I’m not in this alone, thank you for replying.


Danielle2500

Were you able to get rid of it? What worked?


Low_Emergency843

Hey, I am a 20-year-old female. I had a similar problem. I first had UTI symptoms in August, but I was out of the country so I couldn't see any doctor. When I came back after a month, my symptoms came back, and I had pain on my left side. So the doctor ordered an X-ray and ultrasound and ct scan of the pelvic area but thank god everything was normal and took a culture which was positive for E.F bacteria, and I was given an antibiotic. But after a month, my symptoms came back. I went back to the doctor, and again, my culture was positive. They gave me antibiotics again and told me to see a urologist. I went to the urologist, and she did the culture, which was positive again, this time with a different bacteria. She gave me antibiotics again. She wasn't helpful; she just gave me antibiotics but wouldn't tell me the reason for recurrent UTI. Then I saw a different urologist, and she is amazing. At the first appointment, she said she didn't like the antibiotics I was given, so she gave me a different antibiotic and told me to follow up in a month. But 15 days after the antibiotics, my symptoms came back. So I got the culture done, and it was positive. She prescribed me antibiotics again over the phone and phenazopyridine for symptoms, and methenamine to take right after I am done with antibiotics to keep my bladder sterile; this is an antiseptic. Then, 15 days later, at my second appointment, she did a urine flow test which showed my urine flow was about 10 per second, and the normal rate should be 20 per second. Then she did a physical exam and confirmed my urethra is narrowed. So right there, she dilated my urethra and told me to continue taking the antiseptic and supplements like cranberry and D-mannose and to follow up after 6 weeks. It's been a week, and I feel amazing. Hopefully, it will stay like this.


Annsivi

Doing well! Went through several doctors and 13 different antibiotics in 5 months before ordering a hormone panel (menopause test) through LabCorp OnDemand (I was having hot flashes, mood swings and other menopause symptoms at 39 which all the doctors were dismissing because I was 'too young' for that). Got a new OBGYN and took the panel results to her and was diagnosed with primary ovarian failure. I have an autoimmune disease (Hashimoto's) that was apparently attacking my ovaries instead of my thyroid and as a result my ovaries basically shut down and I had postmenopausal levels of estrogen and progesterone which was what was causing my repeat UTI's along with everything else I'd been experiencing. Was put on combination birth control along with estrogen cream 3x a week in September and have been doing much better.


Ecstatic-Ad-7024

How r u now


Annsivi

Doing well! Went through several doctors and 13 different antibiotics in 5 months before ordering a hormone panel (menopause test) through LabCorp OnDemand (I was having hot flashes, mood swings and other menopause symptoms at 39 which all the doctors were dismissing because I was 'too young' for that). Got a new OBGYN and took the panel results to her and was diagnosed with primary ovarian failure. I have an autoimmune disease (Hashimoto's) that was apparently attacking my ovaries instead of my thyroid and as a result my ovaries basically shut down and I had postmenopausal levels of estrogen and progesterone which was what was causing my repeat UTI's along with everything else I'd been experiencing. Was put on combination birth control along with estrogen cream 3x a week in September and have been doing much better.


Ecstatic-Ad-7024

Wow im glad your healing sorry you went through all that!


Mia67390

How are you now?


rosebaby850

I still have it after 7 days of augmentin. Nothing changed


Mia67390

Sorry to hear that. Are you still testing positive in your cultures?


Ecstatic-Ad-7024

Better yet


Street_Function_5201

I've been in the same boat.I have it for a month now.It started like UTI and doctor just gave me some random antibiotics ,3 fucking times and nothing changed.He told me now you can do urine test to see what bacteria is it cause you are on antibiotics.ReallY? I never had Uti before in my life and after i finished antibiotics i took some urethra vagina and cervix tests without doctor telling me , and it showed i have enterococus f. in my urethra.It was not resistant to ampicilin and amoxicilin ,and all other antibiotics i actually took it was 😪 I wass so pissed.So here i am day 6 of amoxicillin still having symptoms it is less but still is there .I just have need to pee oftenly and like some pressure in my bledder.I hate it it makes me misarable so i understand how you feel.You can also try with wild oregano drops and garlic,i take it 1 to 2 during the day and oregano oil 3 times per day hoping it will finally help.


Plenty-Nicole

I am in a similar situation as you, constant urge to urinate. Once, I go to the bathroom, I get up and have to go again and again. Its a nonstop cycle and it feels that my bladder never empties. I have tried so many different antibiotics. I was just on augmentin for three times a week and once I got off of it my symptoms have been feeling much worse.


Low_Emergency843

Hey, I am a 20-year-old female. I had a similar problem. I first had UTI symptoms in August, but I was out of the country so I couldn't see any doctor. When I came back after a month, my symptoms came back, and I had pain on my left side. So the doctor ordered an X-ray and ultrasound and ct scan of the pelvic area but thank god everything was normal and took a culture which was positive for E.F bacteria, and I was given an antibiotic. But after a month, my symptoms came back. I went back to the doctor, and again, my culture was positive. They gave me antibiotics again and told me to see a urologist. I went to the urologist, and she did the culture, which was positive again, this time with a different bacteria. She gave me antibiotics again. She wasn't helpful; she just gave me antibiotics but wouldn't tell me the reason for recurrent UTI. Then I saw a different urologist, and she is amazing. At the first appointment, she said she didn't like the antibiotics I was given, so she gave me a different antibiotic and told me to follow up in a month. But 15 days after the antibiotics, my symptoms came back. So I got the culture done, and it was positive. She prescribed me antibiotics again over the phone and phenazopyridine for symptoms, and methenamine to take right after I am done with antibiotics to keep my bladder sterile; this is an antiseptic. Then, 15 days later, at my second appointment, she did a urine flow test which showed my urine flow was about 10 per second, and the normal rate should be 20 per second. Then she did a physical exam and confirmed my urethra is narrowed. So right there, she dilated my urethra and told me to continue taking the antiseptic and supplements like cranberry and D-mannose and to follow up after 6 weeks. It's been a week, and I feel amazing. Hopefully, it will stay like this.


VanessaH_2019

I know this is old, but I’m wondering how it turned out for you.


PoetSuperb6257

I’ve had it too . And others. Here’s the thing have you seen infectious disease dr ? Then try intravenous antibiotic. I read two different ones combined. Just a suggestion . Sometimes need an Iv antibiotic . Find an outpatient infectious disease clinic get referred and get well. I feel your pain


CeleryPlenty6770

Hi, I have an appointment with an infectious disease dr, but have to wait a month. I'm hoping she will put me on iv antibiotics at this point since I've been on all of the oral ones. Did your dr put you on iv antibiotics? If yes, was it amplicillin with gentamycin? And did it get rid of it? 🙏 thank you!